Guest Author Geoff Lomax is CIRM’s Senior Officer for Medical and Ethical Standards.

In the spirit of Stem Cell Awareness Day, Cell Stem Cell has compiled a “Public Interest” collection of articles covering ethical, legal, and social implications of stem cell research. The collection may be found here.

Ethics and Stem Cell Therapies

The collection covers topics ranging from research using human embryos to the use of stem cell therapies in patients.

For those interested in the history of stem cell controversies, Herbert Gottweis offers a detailed review of the U.S. federal policy debate. This debate has led to inconsistent policies and disrupted research. Gottweis argues that patients will benefit only if we adopt a comprehensive, proactive policy approach instead of relying on quick legal fixes.

What struck me most about this collection was its focus on stem cell treatments and “tourism.” Many articles examine how stem cells are used in patients. This focus shows how far the field has advanced. Clinical trials are now a reality, raising two related concerns.

First, we must ensure that prospective patients are well‑informed before joining a clinical trial. Second, we need to prevent “stem cell snake oil,” where people market unproven procedures. Both issues share the same solution: empowering and educating patients and their support networks.

Stem Cell “Tourism”

For example, in Stem Cell Tourism and Public Education: The Missing Elements, Master writes:

“It is important for the scientific, medical, ethics, and policy communities to continue to promote accurate patient and public information on stem cell research and tourism and to ensure that it is effectively disseminated to patients by working alongside patient advocacy groups.”

Master’s team found that groups committed to the advancement of good science, including patient advocates and researchers, often lacked basic information about clinical trials and other options for patients. This lack of information may contribute to patients being wooed by those pitching unproven procedures. Thus, the research community should continue to work with patients and advocacy organizations to identity options for treatment.

Therapeutic Hope

Another aspect of patient empowerment is what Insoo Huyn refers to as “therapeutic hope” in his piece: Therapeutic Hope, Spiritual Distress, and the Problem of Stem Cell Tourism. Huyn suggests that a supportive system for delivering cell therapies should includes nurturing hope. He writes, “patients might understand when an intervention’s chances of success are extremely remote at best, but may still want to ‘‘give it a shot’’ as long as a beneficial outcome cannot be ruled out as categorically impossible.”

Huyn recognizes that well developed early-stage clinical trials are not expected to provide a benefit to patients (they are designed to evaluate safety), but the nature of the therapeutic (often cells) means there may be some real effect.

Ethics Taskforce

A third piece by the ISSCR Ethics Taskforce titled Patients Beware: Commercialized Stem Cell Treatments on the Web presents a guide to evaluating therapies. They present five principles that patients, researchers and advocates can rally around to identify credible interventions. The taskforce states:

The guiding principles for the development of the recommended process were that (1) the standards for identifying and reviewing clinics and suppliers should be objective and clear; (2) the inquiry and review process should be publicly transparent and relatively straight- forward for any clinic or practitioner to comply with; (3) conflicts of interest, if any, of the declarant ought to be disclosed to the ISSCR; (4) there should be no actual or apparent conflicts of interest of staff or others involved in the inquiry or review process for any particular matter; and (5) any findings that a clinic fails to meet standards should be communicated in a specific factual way, rather than with broad conclusions of fraudulent practices.

While the Cell Stem Cell Public Interest series covers a range of issues related to stem cells and society, the emphasis on treatments and patients is a reminder of how far the field has come. There is broad consensus that patients, researchers and advocates have roles to play in advancing safe and effective cell therapies.